Why One Man Volunteered To Have 8 Blood-Sucking Ticks Attached To His Knee

John Gordon (pictured above) isn't sure exactly when he was bitten, but when he went to the doctor, they pulled eight deer ticks from his left knee. The tiny bugs were still alive and wriggling. Instead of being freaked out, Gordon was excited. He'd volunteered to allow these ticks to latch onto him and feast.

"You do feel a little itching while they're on there," says Gordon, 58, who lives in Bethesda, MD. He was one of 36 volunteers in a wildly unusual experiment that is flipping Mother Nature's tables, attempting to use humans to infect ticks with Lyme disease. He had watched keenly a few days earlier as the hungry ticks were stuck onto his skin, corralled by a foam ring, and then covered with a bandage. For the next several days, they would be his constant companions, joining him for meetings at the commercial real estate firm where he works and in bed with him at night. (His wife, Christine, opted to sleep in another room.) It didn't hurt, but he felt a little tickle when one of the minuscule arachnids finally burrowed into his skin.

His friends told him he was crazy, but Gordon submitted himself to this study because he was nearly disabled by Lyme disease 7 years ago. It was 2007, and as if out of nowhere, his left knee swelled up and hurt so much that he was reduced to hobbling around with a cane. "We moved from doctor to doctor, hoping someone was going to figure it out," Christine Gordon says. "It was all kind of like a bad dream."

After more than a year of shuttling among specialists, enduring two unnecessary knee surgeries, and having a doctor tell him it might be cancer, Gordon was finally diagnosed with Lyme disease.

The couple's frustrating search for answers isn't uncommon among people who've been bitten by ticks. Even after diagnosis and treatment with antibiotics, thousands of people—up to 20% of the 300,000 thought to be infected each year—continue to report extreme fatigue and weakness, shooting pains, joint swelling, and memory loss, among many other symptoms that are vague enough to perplex doctors but can be so grave as to make a person unable to stand long enough to cook dinner.

To many such sufferers, this distress seems like evidence of chronic Lyme disease, in which the infection persists after treatment. But many doctors and infectious disease specialists aren't convinced chronic Lyme is a real condition. They contend that Borrelia burgdorferi, the bacteria that causes Lyme, typically succumbs to the standard 28-day regimen of antibiotics, and that when symptoms persist, there's no evidence that continuing with a longer course of more of the same drugs is effective.

The question of whether chronic Lyme disease exists or not is one of the most hotly debated topics in medicine today. On one side are the patients and so-called Lyme-literate doctors who believe that chronic Lyme is a serious disease in need of attention. Angry that there's no consensus about what's causing the persistent symptoms, they've staged demonstrations across the country to protest what they call Lyme denialism. On the other side stand doctors and scientists who insist that, whatever these patients are suffering from, it's not necessarily Lyme, and that continuing to treat it as such is not only ineffective but sometimes harmful.

Current diagnostics are too poor to end the dispute. No test yet can identify an actual Lyme infection—the bacteria pulls a disappearing act inside the human body—while the current standard-bearer, the antibody test recommended by the CDC, reveals only whether an immune response to Lyme has taken place. (It cannot say when the infection occurred in the first place or whether it has been cured.) Given these shortfalls, the best chance to uproot the camps' entrenched positions is to find another way to figure out if the bacteria really can persist beyond treatment. Which is why Adriana Marques, an infectious disease expert at the National Institutes of Health, put those pathogen-free ticks on Gordon's knee.

Marques is a Sherlock of infectious diseases, a medical investigator in rabid pursuit of clues that will solve our struggles with difficult infections such as Epstein-Barr, shingles, and Lyme disease. Her study might sound like it belongs more to the bloodletting-and-leeches era of medicine, but it is in fact at the very frontier of research into new ways of diagnosing the mysterious disease.

"We use the tick as a tool to find evidence of the bacteria in humans," Marques says. If Gordon or any of the other subjects—all of whom had been diagnosed with Lyme disease and treated with antibiotics—success-fully reverse-infected one of the bugs removed from their skin, it would indicate that the bacteria had in fact survived treatment. Even if just trace signs appeared, scientists would know that the bacteria could persist after treatment, dead or alive. And if the ticks remained free of Lyme bacteria? That would count against the chronic Lyme theory.

Several studies using this peculiar technique, called xenodiagnosis, have been done in monkeys and mice. When researchers at Tulane University allowed Lyme-free ticks to feed on macaques that had been treated with antibiotics for the disease, they ultimately found the bacteria in the ticks, providing the strongest indication yet that the pathogen can survive treatment.

Marques decided to do a similar study, but in humans. In 2010, she and her team put out a call for volunteers. "I have to give Dr. Marques and the NIH a lot of credit," says Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center. "To do a study like this in humans is not something most people, including me, would think of."

Just how Gordon entered the Lyme house of mirrors he doesn't know, but he didn't like being there. He often walked his golden retriever along a wooded path near the Potomac River—exactly the kind of spot where deer ticks like to hang out, waiting for fresh blood—but he never noticed the hallmark bull's-eye rash that doctors can use to diagnose the infection. He often got poison ivy and poison oak on his walks, he says, so he might have mistaken a Lyme rash for one of those irritations; or he could have been one of the 20 to 30% of people who get infected and never develop a rash. He also doesn't recall having any of the other common symptoms. One day his knee suddenly felt swollen and stiff, so he figured he had twisted it hiking or at one of his weekly tennis matches. "I felt great except for that," he says. "I didn't think about going to my doctor."

Even if he had, the infection may have remained elusive. B. burgdorferi is a tough target. As soon as it infects a person, it disperses through the bloodstream. Then this coil-shaped bacteria, or spirochete, uses its corkscrew shape to burrow into human tissue, infecting joints, the heart, and even nervous system tissue. In the meantime, it changes its appearance to escape detection by the immune system. Because this bacteria doesn't follow a familiar pattern, immune cells have no way to identify the invaders. So it makes sense that the CDC-approved tests, which look for Lyme antibodies for proof the body has encountered the pathogen, are far from 100% accurate.

Like Marques, Eva Sapi, a scientist and director of the Lyme disease program at the University of New Haven, has dedicated a sizable portion of her time and intellectual efforts to proving that chronic Lyme is real. "Something's there, whether it's Borrelia being able to survive years and years of antibiotic treatment or whether it's leftover junk," she says. For 8 years, she's studied how the spirochetes behave in lab conditions. She wants to know how Borrelia, which has shown no signs of antibiotic resistance, might live on despite a weeks-long attack by drugs that are designed to eradicate it.

Sapi's motivation is personal: In 2001, she was working as a cancer researcher at the University of New Haven when she was perplexed to find that she was forgetting names and basic information. "For a young researcher, that was a struggle," she says. An MRI revealed lesions in her brain. She was terrified. These can be a symptom of late-stage Lyme disease, and though Sapi was an avid hiker who spent plenty of time in deer country, results from the CDC-recommended Lyme test came back negative. Not knowing what else to do and fairly convinced it was Lyme, she sought out alternative tests and doctors who would start her on treatment. "At this point I was in such bad shape, I would have taken snake oil," Sapi says.

She was treated with antimicrobial herbs, and her recovery was slow. It took 2 years for her to start to feel better, and she's still not completely back to normal. During her recuperation, Sapi made the midcareer transition from cancer research to infectious diseases.

In 2012, she and her colleagues announced a potential explanation for why the bacteria evades detection and, in her view, outwits treatment: They found that Borrelia occasionally assembles into solidified, protective groups (called biofilms) that can make an infection chronic and very difficult to treat. Some researchers are skeptical that we'll ever find evidence of Borrelia biofilms inside patients, but Sapi and others think the bacteria may use biofilms to hold fast within tissue in the body despite antibiotic treatment.

Other scientists are also trying to explain the constellation of long-term symptoms reported by Lyme patients. One notion is that antibiotics do vanquish Borrelia, but the infection causes the body's immune system to go on hyperalert, triggering inflammation and possibly spurring the immune system to attack its own tissue, a condition known as autoimmunity.

Allen Steere, who was the first to describe Lyme in 1976 and is now a director of clinical research at Massachusetts General Hospital, suspects this may be what's behind persistent symptoms, and he's looking for clues in patients like Gordon, whose knee has remained swollen. Other research has identified how different strains of the bacteria seem to lead to worse Lyme cases and greater inflammation. At the moment, people with ongoing symptoms tend to resort to alternative medicine or long-term antibiotic treatment—if they can get it. (Current recommendations advise against long-course treatment, and insurance rarely covers it.) Findings like these could lead to more targeted antibiotics or different therapies. But because the debate is so mired in chronic Lyme, little such progress is being made.

After removing the feasting ticks from Gordon's skin, Marques and her team scanned the bugs for evidence of the elusive bacterium. No dice. But bloodsuckers pulled from two other study participants were more fruitful: They contained the DNA of Borrelia. No, it wasn't the golden ticket—live bacteria—but it nonetheless represents the first definitive evidence that the bacteria can continue on, dead or alive, in humans.

"This kind of study is a potential game changer," says Fallon, the Columbia University Lyme researcher. "It supports the hypothesis that the infection may persist after antibiotic therapy." Monica Embers, an assistant professor at Tulane who worked on the study in monkeys, points out that we still don't know whether persistent spirochetes remain infectious, nor do we know how they may be causing the disease. But even the CDC concedes that Marques's finding is big. "This is an important study that might help us better understand what's going on," says Paul Mead, chief of epidemiology and surveillance at the CDC's Bacterial Diseases Branch.

For her part, Marques is planning a larger xenodiagnosis study. Her work might ultimately yield results that will push doctors to acknowledge the need for bold new approaches to treatment. In the meantime, catching more cases earlier would help. That lowers the risk of lasting symptoms after treatment and may simply be a matter of physicians and nurses asking the right questions. Gordon worked with orthopedists, physical therapists, an oncologist, an infectious disease expert, and others. But it wasn't until a nurse mentioned Lyme that anyone considered testing him for it, more than a year after his knee swelled up. "Lyme is so prevalent, we just assumed that it would already have been considered," he says.

Despite his ordeal, Gordon counts himself among the lucky ones. After he'd been on the standard antibiotics just a few weeks, his knee started to get better. In months he was back to tennis, basketball, hiking, and skiing. His left knee is still a bit sore and stiff, but he blames that on the two unnecessary surgeries he endured, rather than the Lyme itself.

Those who don't recover so swiftly are clamoring for more research and maintain that the CDC and other mainstream researchers are hardly paying lip service to their concerns, much less funding enough outside-the-box research like Sapi's and Marques's.

"I don't like that some doctors don't want to look into different possibilities," Sapi says. "Every aspect of this disease needs to be investigated so we can better understand what Borrelia is capable of."

For now, only time—and perhaps Marques's ticks—will tell.

Do You Live With Lyme Disease?Lyme cases have been reported in every state but Hawaii, with many cases being contracted from traveling outside of the country. Use our interactive map, find out what your state is up against.